Evaluation of Experiences and Impact of Patient Engagement on e-Health Research: A Qualitative Study
Conclusion: PE must be prioritized from study conception, explicitly programmed into study conduct and valued by integrating patient partner input. (Source: Healthcare Quarterly)
Source: Healthcare Quarterly - April 14, 2022 Category: International Medicine & Public Health Source Type: research
Acknowledgements
(Source: Healthcare Quarterly)
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
Patient-Oriented Research: Enhancing Partnership- Engaged Knowledge Mobilization for Impact
Patient-engaged research requires strong patient and applied partnerships to realize innovative knowledge mobilization. Demonstrating impact and sustainability, advancing health equity, evaluating engagement and incorporating flexibility are key ingredients to advance engagement science. (Source: Healthcare Quarterly)
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
Advancing Patient-Partnered Research: Empowerment, Innovation and Evolution
From the perspective of patient partners, the Ontario SPOR SUPPORT Unit Engaging Multi-stakeholders for Patient Oriented-research Wider Effects and Reach Awards have facilitated successful patient-partnered research projects, which, in turn, have led to an evolution in patient partnerships and engagement strategies. The 15 projects profiled in this special issue point to the beneficial impacts of patient-partnered research. (Source: Healthcare Quarterly)
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
“This Is About My Health”: Partnering with Patients and Families to Share Knowledge and Tools about Healthcare Communication for Adults with Intellectual and Developmental Disabilities
This project involved patients with intellectual and developmental disabilities and a family caregiver as advisors on a knowledge translation (KT) effort on healthcare communication. The project demonstrated that with the right supports, patient and family advisors can effectively share their experiences and add a powerful voice to KT activities. Lessons learned included the importance of being creative, responsive and flexible to support the advisors, of recognizing their expertise and of building capacity in multiple advisors to allow for diverse voices and greater flexibility. This work requires adequate time and fundin...
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
Research, Sovereignty and Action: Lessons from a First Nations-Led Study on Aging in Ontario
First Nations in Ontario are building capacity to leverage health services data in Ontario to provide robust, First Nations–driven health evidence. Beyond providing evidence, population health research processes must involve diverse First Nations' perspectives, collective capacity building and translation of research findings into action through integrated and community engaged knowledge translation and exchange (KTE) approaches. Suggested ways include integrating stories and traditional knowledge, prioritizing gatherings and establishing an enduring commitment to action. To effectively support First Nations' sel...
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
Equity-Mobilizing Partnerships in Community (EMPaCT): Co-Designing Patient Engagement to Promote Health Equity
Equity-Mobilizing Partnerships in Community (EMPaCT) is a novel approach to patient engagement that centres diverse lived experiences and promotes equity-oriented and inclusive partnerships. As an independent community table, EMPaCT is made up primarily of patients/diverse members of community. Researchers and other decision makers come to this table with their projects to learn how to make their project more inclusive and equitable. In this paper, we detail how we used participatory co-design to define, build and grow EMPaCT as an innovative and scalable patient partnership model that promotes bottom-up action for health ...
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
Patient Engagement in a Multi-Stakeholder Workshop to Plan the Collection of Patient-Oriented Outcomes for Children with Inherited Metabolic Diseases
Building on a study to develop core outcome sets for children with rare inherited metabolic diseases, the purpose of this workshop was to inform the design of longitudinal pediatric registries that support registry-based clinical trials. This workshop was co-designed by two patient/family partner investigators and attended by two family advisors who received preparatory training. Patient partners and advisors recommended integrating the collection of registry data into everyday life and highlighted the importance of transparent communication and attention to the issue of integration of patient-reported data into clinical c...
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
Building a Platform for Meaningful Patient Partnership to Accelerate “Bench-to-Bedside” Translation of Promising New Therapies
Abstract
Engaging patients as partners in the design and execution of early-phase clinical trials offers a unique opportunity to ensure patient perspectives are considered. Here we describe our experience partnering with four individuals with lived experience of blood cancer to co-develop documents and services to support participants of an early-phase trial. Through regular team meetings, patient partners co-developed a visual informed consent document and a non-technical summary of the informed consent document to facilitate participant understanding of trial procedures. Overall, patient partners highlighted important t...
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
Partnering with Patients to Enhance Access to Kidney Transplantation and Living Kidney Donation
Kidney transplantation gives many patients with kidney failure a longer and healthier life. Unfortunately, some transplant-eligible patients will never receive one. In this paper, we describe how patients and researchers collaborated on new strategies and programs to enhance access to kidney transplantation and living kidney donation. These efforts led to the creation of the Transplant Ambassador Program (TAP). TAP is a patient-led program that helps connect patients who have kidney failure to individuals who have successfully received a kidney transplant or donated a kidney. We also detail barriers, facilitators and lesso...
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
The Retinoblastoma Research Booklet: A Catalyst for Patient Involvement in Retinoblastoma Research
Peer-to-peer recruitment efforts are important in generating interest and participation of patients as partners in research but difficult to sustain when face-to-face interactions are limited. The Retinoblastoma Research and You! booklet, co-developed by patients, researchers and health professionals, serves as a guide for patient engagement in research while retaining an element of personalization. The Retinoblastoma Research and You! booklet was developed through two virtual workshops to iterate and finalize the booklet design and content. The booklet outlines how individual patients' lived experiences and skills can inf...
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
The Youth Wellness Quest: A Comprehensive Online Mental Health Literacy and Self-Advocacy Resource Developed by Youth for Youth
A lack of mental health literacy may impact youths' ability to advocate for themselves as they seek to access and navigate the mental healthcare system. Recognizing this, members of the National Youth Action Council at the Centre for Addiction and Mental Health in Toronto, ON, developed the Youth Wellness Quest resource. This health literacy resource informs youth of possible available services, increasing their capacity to make informed mental healthcare decisions. The youth-led process of creating this resource, from development to dissemination, is described within this paper, showcasing how youth can lead the developme...
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
In Pursuit of Better Care Transitions: Lessons Learned from a Co-Designed Project
In this commentary, we reflect on our experience of co-designing an intervention to address challenges due to delayed hospital discharge (known as alternate level of care in Canada). Through a series of focus groups and co-design sessions, we identified common challenges with delayed discharge (including a lack of services while waiting for discharge and poor communication with the care team). In co-designing service improvements, we (1) amplified the voices of patients and caregivers, which helped them feel unified in their experience and (2) developed tools that aim to improve patient, caregiver and provider experiences....
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
Evaluation of Experiences and Impact of Patient Engagement in E-health Research: A Qualitative Study
Conclusion: PE must be prioritized from study conception, explicitly programmed into study conduct and valued by integrating patient partner input. (Source: Healthcare Quarterly)
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
Building Capacity for Patient-Oriented Research: Utilizing Decision Aids to Translate Evidence into Practice, Policy and Outcomes
Conclusion: Patient-partner collaborations assisted with design thinking, dissemination and scalability. (Source: Healthcare Quarterly)
Source: Healthcare Quarterly - April 13, 2022 Category: International Medicine & Public Health Source Type: research
